Dear, Society...

Welcome to our first post here at The Awareness Project! Our opening piece is written by @seriously_Stoma. After living with Crohn's Disease for many years and living life with an ileostomy, this open letter to society brings to light some of the challenges and misunderstandings that he has experienced. #Crohnsdisease #ostomy #hiddendisability #chronicillness

Dear Society,

we need to talk about Invisible Disabilities and Chronic illness

I have been wondering about how I to address this issue, and so I have decided to write to you in this open letter. I will begin with a little whistle-stop tour about me. I have severe Crohn’s Disease. Many of you may not have heard of Crohn’s Disease before so I will do my best to explain it; Crohn’s Disease is an Inflammatory Bowel Disease (IBD) and is caused by several factors that lead to the immune system attacking itself. It primarily affects the digestive tract, from mouth to anus, and causes ulcers, bleeding, intense pain, cramps, bowel perforations, and malnutrition. The treatment for Crohn’s Disease is a mixture of medications that suppress the immune system and reduce the damage to the lining of the bowel and digestive organs. In many cases, such as my own, the bowel can become so badly damaged that it needs to be surgically removed, this procedure can leave these patients with an ileostomy, this is a type of Stoma. I have an ileostomy and my Crohn’s is managed by several medications, including my ‘main’ treatment called Infliximab. I won’t go through my entire story, because this is way bigger than just me, but I have had years of struggling with my condition, the pressures, and expectations; just like hundreds of thousands of other people.

I will cut to the chase, recently I started a new job, and I absolutely love it! I’m working with young people in a local college. I also, however, have fallen sick with a Crohn’s Complication. I became so dehydrated due to losing fluids from my stoma that my kidneys began to stop functioning. I felt rubbish on Monday, left work at 12 on Tuesday and was sent to hospital by work at 10 am Wednesday. I went to work so severely dehydrated that my kidneys began to pack up on me, why did I put myself in that position? Because I’m terrified of making a fuss, being accused of being a hypochondriac, I’m afraid of Sickness and Absence policies… I’m afraid of what society will think.

Disabilities come in many forms, and when you think disability you think wheelchair users, severe neurodiversity that causes impairment…something visually identifiable. Not all disabilities present themselves in such ways, for people like me, we go unnoticed until challenged about our condition or speak out about it. We have no visibly obvious reason why we may have difficulty with daily tasks, and so we try to conform to the expectations of society and struggle through, trying not to make a fuss and often making ourselves mentally and physically exhausted.

So, I’m here asking for your understanding.

I can only speak with authority on how Crohn’s Disease affects my daily life, but from talking with many others in the Invisible Disability community, it appears we all share similar challenges. It is with a genuinely hopeful heart, that I want to share just a few of those challenges with you, so that you may better understand and accept that sometimes, we need to take life a bit slower than the rest of you guys, to get ourselves back on our feet.

Firstly, I’ll talk about Fatigue. This is the overall feeling of tiredness and lack of energy. It’s the most common daily battle for myself and many other IBD patients. Though we may have eaten correctly, had a solid 8 hours sleep, hydrated and had all the expected rest, sometimes we are just completely exhausted. Our bodies just can’t keep up with the day to day routines because of the battles happening inside us on a biological level. We want to be up and doing things, we want to be up and full of life every day, we do our best, but please understand that we may need a few days here and there to recuperate. We fight fatigue and make ourselves feel worse through the fear of society labeling us as ‘Lazy’ Please know that we are not being lazy, we are treating a symptom of our relative condition. When the act of getting up and getting a shower is enough to put you back to bed, when basic tasks like going to the shop for bread is exhausting, that’s fatigue.

Joint pain and Associative Arthritis are another very common complication for a whole range of invisible illnesses. Crohn’s Disease is an inflammatory disease, and that inflammation doesn’t just confine itself to the digestive tract, it can affect the eyes, skin...and the joints. In me personally, this has manifested itself as Arthritis and being in my late 20’s people often just straight up don’t believe me. “But you’re too young to have arthritis?” “Nooooo it is just an ache and pain it will soon pass” Sadly not, I self-inject a medication called Methotrexate every Friday to combat the Arthritis. So, if you know a young person who ‘looks fit and healthy’ but is walking slowly or finding fine motor movements difficult, or needs to rest more during colder weather, please try to help them. It is hard not being fully mobile all the time and we are honestly trying our best.

Brain fog…Maybe one of the hardest for me to explain. Its periods of disorientation, confusion, forgetfulness and being muddled. Many Invisible disabilities and Chronic illnesses can cause brain fog, and not all episodes of brain fog are the same, sometimes I am just a bit unorganized and others I can hardly form a coherent sentence. A person who experiences brain fog can be functioning perfectly at 11 am and be forgetting what they walked into a room for and what they were doing by 12. It is annoying for us as well; I personally feel like such a muppet when I need to rely on those close to me to remind me not to forget anything before I go out because I literally can’t think. So, if you could have patience with us when we are in this kind of place, we would really appreciate it.

Dehydration, it sounds so mundane doesn’t it, but as I mentioned earlier, It’s a killer for us guys with Stomas. I never thought for a second that dehydration could get so dangerous so quickly, but it soon proved me wrong. It is easy to say something like “well, have a drink then” and that’s a fair point, but drinking water and some fruit juices are in fact counter-productive for us ostomates. The small bowel doesn’t absorb water very well at all, and so it goes straight through us, washing away nutrients and minerals with it. We need to be mindful of our fluid intake, how fast we drink it and what we are drinking. You guys are so lucky to be able to just grab a bottle of water and crack on with your day, it is not that straight forward for us. And if we are saying things like ‘I feel little dry’ give us a nudge to drink some rehydration salts or take some small sips of water, please? We would really appreciate it.

They are 4 factors out of a very long list. And they are on top of the symptoms that our conditions themselves cause directly. Sometimes us guys with Invisible disabilities and Chronic illness just can’t keep up, we do miss a beat, we do need rest and sit down…And that has got to be okay. We want to make the most of our lives just like everyone else does, and as you know life is hard as standard. I have only touched the very tip of a big iceberg, and I really hope you come back to me or to others with Invisible Disabilities and chronic illness and ask us questions, to have a healthy conversation, because it’s a conversation that is well overdue.

I hope to hear back from you soon, Society.

Much Love

Seriously_Stoma